somerset, wiltshire, avon and gloucestershire …...south west strategic clinical network somerset,...

South West Strategic Clinical Network Somerset, Wiltshire, Avon and Gloucestershire Cancer Services

Version 1.0 SWAG CUP SSG

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Somerset, Wiltshire, Avon and Gloucestershire (SWAG) Cancer

Services

Cancer of Unknown Primary (CUP) Network Site Specific Group

Constitution

June 2015

Revision due: April 2016



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VERSION CONTROL

THIS IS A CONTROLLED DOCUMENT. PLEASE DESTROY ALL PREVIOUS VERSIONS ON RECEIPT

OF A NEW VERSION.

Please check the SWSCN website for the latest version available here.

VERSION DATE ISSUED SUMMARY OF CHANGE OWNER’S NAME

Draft 0.1 30th June 2015 First draft SWAG CUP SSG

1.0 30th June 2015 Finalised SWAG CUP SSG

http://www.swscn.org.uk/networks/cancer/site-specific-groups/aswg-site-specific-groups-2/cancer-of-unknown-primary-ssg/



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This constitution was prepared by:

Tania Tillett, Chair of the SWAG CUP SSG, Consultant Medical Oncologist, Royal United

Hospital Bath NHS Foundation Trust

Helen Dunderdale, SWAG Cancer Network SSG Support Manager

This constitution has been agreed by:

Name Position Trust Date agreed

Matthew Sephton Consultant Medical Oncologist

Yeovil District Hospital NHS Foundation Trust (YDH)

June 2015

Saiqa Spensley

Consultant Clinical Oncologist

Taunton and Somerset NHS Foundation Trust (TST)

June 2015

David Farrugia

Consultant Medical Oncologist

Gloucestershire Hospitals NHS Foundation Trust (GLOS)

June 2015

Thomas Wells


Weston Area NHS Health Trust (WAHT)

June 2015

Paola Di Nardo


University Hospitals Bristol NHS Foundation Trust (UH Bristol)

June 2015

Vivek Mohan



June 2015

Anna Kuchel Consultant Medical Oncologist


June 2015



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CUP NSSG Constitution Contents

Section Contents Measures Page

1 Statement of Purpose 5

2 Structure and Function

6

2.1 Network Configuration 14-1C-101m 6

2.2 Network Group Membership 14-1C-102m 15

2.3 Network Group Meetings 14-1C-103m 16

2.4 Work Programme and Annual Report

14-1C-104m 16

3 Coordination of Care /

Patient Pathways

16

3.1 Clinical Guidelines 14-1C-105m 16

3.2 Network CUP Guidelines and Algorithms on the Systemic Therapy of Treatable Syndromes

14-1C-106m 16

3.3 Patient Pathways 14-1C-107m 17

3.4 Patient Pathways for TYA

3.5 Patient Investigation and Management Policy

14-1C-108m 17

4 Patient and Public Involvement

17

4.1 User Involvement 18

4.2 Patient Experience 14-1C-109m 19

4.3 Charity Involvement 19

5 Clinical Governance

19

5.1 Clinical Outcomes / Indicators and Audits

14-1C-110m 19

5.2 Data collection

19

6 Clinical Research

19

6.1 Discussion of Clinical Trials 14-1C-111m 19

7 Service Development 20

7.1 Education 20

7.2 Sharing Best Practice 20



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8 Funding

20

8.1 Clinical Commissioning Groups 20

8.2 Industry 21

9 Appendices

22

9.1 Appendix 1: Template Agenda 22

9.2 Appendix 2: SWAG User Involvement Brief

24

9.3 Appendix 3: Charity Involvement Brief

24

1. Statement of Purpose

The Somerset, Wiltshire, Avon and Gloucestershire Cancer Network CUP Site Specific Group

(NSSG) endeavours to deliver equity of access to the best medical practice for our patient

population. The essential priorities of the NSSG are to provide a service that is safe, high

quality, efficient and promotes positive patient experiences.

To ensure that this statement of purpose is actively supported, the consensually agreed

constitution will demonstrate the following:

The structure and function of the service is conducted, wherever possible, in

accordance with the most up to date recommended best practice, as specified in the

Manual of Cancer Services, CUP Measures1

An NSSG consisting of multidisciplinary professionals from across the Somerset,

Wiltshire, Avon and Gloucestershire cancer services has been established and meets

on a regular basis

Network wide systems and care pathways for providing coordinated care to

individual patients are in place. This includes the process by which network groups

link to individual MDTs

1 Manual for Cancer Services



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A process for ensuring that the NSSG clinical decision making is in accordance with

the most up to date NICE Quality Standards2 (December 2014) is in place, as are local

clinical guidelines that support the standards

There is a process by which patients and carers can evaluate and influence service

improvements that supports the principle ‘No decision about me without me’3

Internal and externally driven routine risk related clinical governance processes are in

place for evaluating services across the network, and identifying priorities for

improvement

The NSSG have a coordinated approach to ensure that, wherever possible, clinical

research trials are accessible to all eligible cancer patients

Examples of best practice are sought out and brought to the NSSG to inform service

development

Educational opportunities that consolidate current practice and introduce the most

up to date practices are offered whenever resources allow

Processes that can influence the funding decisions of commissioners across the

network are being developed.

2. STRUCTURE AND FUNCTION

The Multi-Disciplinary Teams (MDTs) within the CUP NSSG consist of consultant clinical and

medical oncologists, pathologists, imaging specialists and other health care professionals.

They meet regularly to discuss and manage each individual patient’s care.

2.1 Network Configuration (measure 14-1C-101m)

The SWAG CUP NSSG complies with Peer Review ground rules for networking by meeting

the following criteria:

3 Improving Outcomes – A Strategy for Cancer (2011)

3 NICE guidelines



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The SWAG CUP network group is the only network group for the CUP MDTs

associated with it

All hospitals in the network are associated with a CUP MDT

Relevant hospitals are associated with only one named CUP MDT

The CUP MDTs within the network are the only MDT with this role in its host

hospital

The CUP MDTs are associated solely with the SWAG CUP NSSG

The SWAG CUP NSSG Multi-Disciplinary Teams

Trust CUP MDT CUP MDT Day / Time

MDT referral deadline

Lead clinician to contact for advice

Royal United Hospital Bath NHS Foundation Trust (RUH)

RUH Thursday 10:30 – 11:30

Tuesday 09:30

Tania Tillett 01225 825 207


TST Thursday 08:30 – 09:30

No specific deadline

Saiqa Spensley [email protected] (MDT Coordinator – Emma Pugh)


YDH Tuesday 13:00 – 14:00

Monday 12:00

Matthew Sephton, 01935 384869

Weston Area Health NHS Trust (WAHT)

UH Bristol Thursday morning 8.30

Tuesday 08:00

Thomas Wells, 01934636363, ext. 3990

North Bristol NHS Trust UH Bristol Thursday morning 8.30

Tuesday 08:00

Anna Kuchel [email protected]

mailto:[email protected]





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Referral processes:

Royal United Hospital Bath NHS Foundation Trust (RUH)

Primary care referral:

2WW referral system operational

Referral from cancer site specific MDT:

Patient Name

Hospital ID

DOB

Contact Telephone Number

Source of Initial Referral Date

Initial Referring Investigation Date

Presenting Symptoms

Performance Status Date

CT Staging (Chest Abdo Pelvis) Date


UH Bristol Thursday morning 8.30

Tuesday 08:00

Anna Kuchel

Gloucestershire Hospitals NHS Trust (Glos)

Glos CUP service is currently in set-up.

To be confirmed

To be confirmed

David Farrugia



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MRI Scan (as needed) Date

Routine Bloods Taken (FBC, U+E, LFT, Ca, LDH) Date

Relevant Tumour Markers* Date

Myeloma Screen ** Date

Endoscopy (if relevant) Date

Biopsy Site Date

Other Date

CUP MDM Date

CUP MDM Outcome

Initial Oncology OPA Cons Date

Definitive Oncology OPA Cons Date

Confirmed Diagnosis

Treatment Plan

KEY

Tumour Markers* PSA – men with primarily bone disease Ca125 – women with peritoneal malignancy or ascites AFP and HCG – men with midline nodal disease AFP – suspected primary liver cancer CEA – suspected colorectal cancer or liver only metastatsis Ca19.9 – suspected UGI/HPB cancers Ca15.3 – suspected Breast Cancers

Myeloma Screen** Serum Free Light Chains Bence-Jones Protein Skeletal Survey (if not had CT CAP)



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Primary Care referral:

To be confirmed


To be confirmed


Primary Care referral:

To be confirmed




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Malignancy of Unknown Origin (MUO) Assessment Form

Please complete for each patient referred from Primary Care or as an inpatient

Patient Name

Hospital Number

DOB

Contact telephone number

Source of Initial Referral Date

Initial Referring Investigation Date

Presenting Symptoms

Performance Status Date

CT Chest/Abdo/Pelvis Date

MRI scan (if needed) Date

Routine Bloods Tests (FBC, U&Es, LFTs, Ca2+, LDH) Date

Relevant Tumour Markers

Date

Myeloma Screen Date

Endoscopy (if relevant)

Date

Biopsy Site Date

Other Date

CUP MDT Date

CUP MDT Outcome



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Malignancy of Unknown Origin (MUO) Assessment Form

Initial Oncology OPA Dr Date

Definitive Oncology OPA Dr Date

Confirmed Diagnosis

Treatment Plan

Date

Notes

University Hospital Bristol NHS Foundation Trust (UH Bristol)

Primary Care referral

To be confirmed

Referral from cancer site specific MDT



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University Hospitals Bristol NHS Foundation Trust CANCER OF UNKNOWN PRIMARY

MDT Request Form

Date of MDT Consultant

Patient Name Referred by

DOB Referrers contact number

Patients’ location Date of Referral to CUP team

NHS No. How was patient referred to BRI

Hospital No. Referral date to BRI

Performance Status (see 2nd page for guidance)

Key worker

History and presenting symptoms

Investigation Date of investigation Place of investigation Radiology - Specify

Tumour Markers

Biopsy

Cytology

Current issue for MDT discussion:



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Guidance Notes

Referrals:

Requests for MDT discussion should be made by email to the CUP Team email address by 8am on a Tuesday, prior to MDT discussion on Thursday. Please send with any attachments that you may think the MDT will find useful, e.g. referral letters. The email address is [email protected]

Contact: [email protected] Tel: 0117 3421294

Performance Status (WHO Scale)

WHO Grade Assessment 0 Able to carry out all normal activities without restriction

1 Restricted in physically strenuous activity but ambulatory and able to carry out light work

2 Ambulatory and capable of all self-care but unable to carry out any work: up and about more than 50% of waking hours

3 Capable of only limited self-care: confined to bed or chair more than 50% of waking hours

4 Completely disabled: cannot carry out any self-care: totally confined to bed or chair

Gloucestershire Hospitals NHS Trust (Glos)

Primary Care referral

To be confirmed

Referral from cancer site specific MDT

To be confirmed






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2.2 Network Group Membership (measure 14-1C-102m)

All participants at MDTs are welcome to attend the SSG meetings.

The SWAG CUP NSSG consists of the following core members:

Name Position Trust

Alfredo Addeo Consultant Medical Oncologist UHB

Anna Kuchel Consultant Medical Oncologist UHB

Tania Tillett Consultant Medical Oncologist RUH

Thomas Wells Consultant Medical Oncologist WAHT

Vivek Mohan Consultant Medical Oncologist UHB

David Farrugia Consultant Medical Oncologist GLOS

Matthew Sephton Consultant Medical Oncologist YDH

Paola Di Nardo Consultant Medical Oncologist UHB

Saiqa Spensley Consultant Clinical Oncologist TST

Robert Pitcher Consultant Pathologist UHB

David Wilson Consultant Radiologist UHB

Colette Reid Consultant Palliative Care UHB

Rachel Royston Consultant Palliative Care NBT

Colin Binks Oncology Specialist Doctor GLOS

Bernadette Panes CUP Clinical Nurse Specialist RUH

Julia Hardwick CUP Clinical Nurse Specialist UHB

Michelle Samson CUP Clinical Nurse Specialist NBT

Samantha Wells CUP Clinical Nurse Specialist UHB

Sarah Colsey CUP Clinical Nurse Specialist NBT

Sarah Maton CUP Clinical Nurse Specialist GLOS

Suriya Kirkpatrick CUP Clinical Nurse Specialist NBT

Laura Pope Upper GI Clinical Nurse Specialist TST

Justine Lloyd Acute Oncology ANP GLOS

Janette Tucker CUP MDT Coordinator UHB

Kerry Youe CUP MDT Coordinator YDH

Carol Chapman Lead Nurse Oncology NBT

Corrine Thomas Lead Nurse Oncology WAHT

Maxine Taylor Senior Research Delivery Manager West of England CRN

Helen Dunderdale Cancer Network SSG Support Manager SWCNS

Samantha Larsen Cancer Network SSG Support Administrator SWCNS



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2.3 Network Group Meetings (measure 14-1C-103m)

The SWAG SSG will meet twice yearly. Agendas, notes and actions, and attendance records

will be uploaded onto the South West Strategic Clinical Network website:

www.swscn.org.uk

Appendix 1 is the template agenda for the CUP NSSG meetings, which is circulated prior to

each meeting to ensure that all members are aware of who is required to attend and that all

subject matters requiring discussion are identified.

Terms of reference are agreed in accordance with the paper Recurrent Arrangements for

Cancer Network Clinical Groups and Responsibilities for Peer Review, as proposed by the

South West Strategic Clinical Network (SCRN) Cancer Network Manager, Jonathan Miller

(14th July 2014).

The NSSG meetings are also conducted in line with the Manual for Cancer Services, CUP

Measures (Version1.1).

2.4 Work Programme and Annual Report (measure 14-1C-104m)

The SWAG NSSG will produce a Work Programme and Annual Report in discussion with the

South West Strategic Clinical Network (SWSCN).

3. COORDINATION OF CARE / PATIENT PATHWAYS

3.1 Clinical Guidelines (measure 14-1C-105m)

The NSSG refers to the NICE Guidelines for clinical management of CUP cancer. Further

details of the local provision of the guidelines are within the separate document as above.

This is reviewed annually to ensure that any amendments to imaging, surgery, pathology,

chemotherapy and radiotherapy practices are up to date.

http://www.swscn.org.uk/

http://www.cquins.nhs.uk/?menu=resources

http://www.cquins.nhs.uk/?menu=resources

https://www.nice.org.uk/guidance/published?type=guidelines



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3.2 Network CUP Guidelines and Algorithms on the Systemic Therapy of Treatable

Syndromes (measure 14-1C-106m)

The NSSG plans to agree network wide guidelines, including chemotherapy treatment

algorithms, in consultation with the CUP MDT leads and the SSG Chair, for the following

treatable syndromes:

Poorly differentiated carcinoma with a midline distribution

Women with predominantly peritoneal adenocarcinoma

Women with adenocarcinoma involving the axillary lymph nodes

Squamous cell carcinoma of lymph nodes in the neck

Poorly differentiated neuroendocrine carcinoma.

Patients will be offered the opportunity to enter clinical trials whenever applicable.

The protocols will be distributed to the relevant cancer site-specific MDTs in the network.

3.3 Patient Pathways (measures 14-1C-107m)

The SWAG network site specific groups refer any patient with metastatic carcinoma of

unknown origin for discussion with the specialist carcinoma of unknown primary (CUP)

MDTs. The CUP MDT is a tertiary referral point once initial investigations have been

undertaken by the site specific MDTs.

Important Definitions:

Malignancy of undefined primary origin (MUO): this is metastatic malignancy identified after a limited number of tests, without an obvious primary site.

Provisional carcinoma of unknown primary (CUP): metastatic epithelial or neuro-endocrine malignancy on the basis of biopsy, with no primary site identified, despite initial investigations and before specialist review.

Confirmed CUP: as above, after specialist review and appropriate specialised investigations.

Patients referred to the CUP MDT will have usually undergone a CT of the chest, abdomen

and pelvis.

Patients who are unfit for treatment (or who opt against investigation) who have had partial

imaging will be discussed to advise on the merits of further investigation.

The SWAG CUP NSSG follows the patient pathways as recommended in the NICE Guidelines

here.

http://pathways.nice.org.uk/pathways/metastatic-malignant-disease-of-unknown-primary-origin#content=view-node%3Anodes-the-role-of-the-carcinoma-of-unknown-primary-origin-cup-team



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3.4 Patient Pathways for Teenagers and Young Adults (TYA)

Details of TYA patient pathways for the SWAG NSSGs can be found on the SWSCN website:

TYA

3.5 Patient Investigation and Management Policy (measure 14-1C-108m)

The network group agree to the following network wide policy, which underpins the

ongoing investigation and subsequent management of all patients presenting as cases of

MUO.

Continuing investigations to find the primary should only be carried out if:

The patient is fit for treatment if the primary were found

The results are likely to affect a treatment decision

The patient understands why the investigations are being performed and the

potential risk and benefits of investigation and treatment

The patient is prepared to accept eventual treatment.

Confirmed CUP Patients without a specific ‘treatable syndrome’ (measure 14-1C-106m) who

are being considered for chemotherapy should:

Have the balance between potential risks and benefits discussed with them

If it is decided to proceed with chemotherapy, be offered entry into a clinical trial if

available

That confirmed CUP Patients with a ‘treatable syndrome’ and fit for treatment,

should be offered chemotherapy according to the network guidelines for the

management of treatable syndromes (measure 14-1C-106m).

This policy will be distributed to the relevant hospitals and cancer site specific MDTs in the

network.

http://www.swscn.org.uk/networks/cancer/site-specific-groups/aswg-site-specific-groups-2/



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4. PATIENT AND PUBLIC INVOLVEMENT

4.1 User involvement

The NHS employed member of the NSSG nominated as having specific responsibility for

users’ issues and information for patients and carers is the Cancer Network SSG Support

Manager. The NSSG actively seeks to recruit user representatives. Appendix 2 contains the

user involvement brief that is circulated for this purpose.

4.2 Patient Experience (measure 14-1C-109m)

The results and actions generated from the National Patient Experience Survey within each

Trust in the NSSG will be reviewed in every NSSG meeting, and the progress of the agreed

improvement programme monitored. Progress will published in the Annual Report.

4.3 Charity involvement

See Appendix 3

5. CLINICAL GOVERNANCE

5.1 Clinical Outcomes, Indicators and Audits (measure 14-1C- 110m)

The NSSG regularly review the data from each MDT’s clinical outcomes, quality indicators

and audits. At least one network audit will be performed each year. The results of this are

presented at the NSSG meetings and distributed electronically to the group.

5.2 Data Collection

Patient data on diagnostics is uploaded to the Somerset cancer registry as part of a National

initiative.

6. CLINICAL RESEARCH

6.1 Discussion of Clinical Trials (measure 14-1C-111m)

Members of the NSSG discuss each MDT’s report on clinical research trials within every SSG meeting. A list of all of the open trials on the CUP NIHR portfolio, and potential new trials is



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brought to each SSG meeting by the West of England Clinical Research Network (CRN) Cancer Research Delivery Manager. Due to the CRNs mapping with the Academic Health Science Networks, Taunton and Yeovil are in South West Peninsula CRN. The Cancer Research Delivery Manager from the Peninsula CRN will provide the NSSG with the data for these Trusts. Information on clinical trial recruitment will be published in the NSSG Annual Report. Potential new trials to open and actions to improve recruitment will be documented in the NSSG Work Programme. The trials available in each Trust will be updated on the South West Strategic Clinical Network website at regular intervals so that the NSSG members can ensure, wherever possible, that clinical research trials are accessible to all eligible CUP oncology patients. The NHS staff member nominated as the research lead for the NSSG is Matthew Sephton.

7. SERVICE DEVELOPMENT

Regular reviews of major service developments and changes in treatment pathways are

conducted at the SSG meetings.

Regular reviews of Chemotherapy protocols is conducted by the NSSG.

7.1 Education

The NSSG meetings will have an educational function. Continuous Professional

Development (CPD) accreditation for meetings with multiple educational presentations will

be sought by application to the Royal College of Physicians. This will involve uploading

presentations and speaker profiles to the CPD approvals online application database. The

approvals process takes approximately six weeks, and can be applied for retrospectively.

The NSSG members will be required to complete a Royal College of Physician’s CPD

evaluation form. Certificates of the CPD points that are allocated to the meeting will be

distributed to the NSSG members.

7.2 Sharing Best Practice

Where best practice in CUP oncology services outside the SWAG NSSG has been identified,

information on the function of these services will be gathered to provide a comparison and

inform service improvements. Guest speakers from the identified services will be invited to

provide a presentation at the NSSG meetings.

Where best practice in CUP oncology services within the SWAG NSSG has been identified,

information on the function of SWAG services will be disseminated to the other cancer

networks.



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8. FUNDING

8.1 Clinical Commissioning Groups

In the event that an insufficiency in the CUP oncology services relating to funding is

identified, the NSSG will gather evidence of the insufficiency via audit and research,

together with feedback about how the provider Trusts have tried to address them. The

consequences of the insufficiencies for patients will be listed so that all key issues are

documented and the required actions made clear. This information will then be fed back to

the Cancer Network Manager for the South West Strategic Clinical Network, who will

present the evidence to the CCG clinical effectiveness group.

8.2 Industry

The Government’s paper Improving Outcomes: A Strategy for Cancer states that ‘working together with other organisations and individuals, we can make an even bigger difference in the fight against cancer’. The NSSG will forge relationships with pharmaceutical companies to seek commercial sponsorship for the meetings in order to make savings that can be fed back into the NSSG cancer services. The NSSG Support Manager will comply with the various rules and regulations pertaining to the pharmaceutical companies’ policies and with the NHS rules and regulations as follows:

Completion of a register of interest form with the NSSG support service host Trust, University Hospitals Bristol NHS Foundation Trust

Declaration of any sponsorship offers

Confirm with all sponsors that the arrangements would have no effect on purchasing

decisions

Ensure that all pharmaceutical companies entering into sponsorship agreements comply with the Code of Practice for the Pharmaceutical Industry (Second Edition) 2012

Obtain advice from the Medical Director or Chief Pharmacist for sponsorship agreements in excess of £500.00

Ensure that where a meeting is funded by the pharmaceutical industry, that this is documented on all papers relating to the meetings



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Ensure that the receipt of funding is approved by an Executive Director and recorded in the Register of Gifts, Hospitality and Sponsorship in advance

Scrutinise contracts with the assistance of Financial Services prior to providing a signature.

9. APPENDICES

9.1 Appendix 1

Template Agenda

Network group membership to attend

Chair, MDT Lead Clinicians, MDT nurse core member, Clinical oncologist, Medical oncologist,

Imaging specialist, Histopathologist, Consultant in Palliative Medicine, User representative 1

User representative 2, Administrative support

Chair to name nominated network group member responsible for users’ issues and

information for patients / carers

Chair to name nominated network group member responsible for clinical trial

recruitment function

Template Agenda

1. Review of last meeting minutes:

2. Clinical opinion on network issues:

Review of MDT membership changes / service

3. Clinical guidelines:

Review if any amendments to imaging, pathology, chemotherapy, radiotherapy, surgical

practices

Version control process



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4. Coordination of patient care pathways:

Review hospital referral processes for TYA / varying indications / investigations and

follow up

Review implementation of primary care referral pro forma

Breach example to discuss

5. Patient experience:

User representative input

Review patient experience survey / identified actions

QOL surveys

Patient information

CNS / keyworker support

6. Quality indicators, audits and data collection:

Current audits / audit outcomes

Audits in the pipeline

Data collection issues

7. Research:

Current clinical trials / recruitment / actions to improve recruitment

Clinical trials in the pipe line

8. Service development:

Early diagnosis

Training opportunities available

Sharing best practice

Innovation

Awareness campaigns



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9. Peer review:

Annual Report

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Work Programme Review

Good practice – specific areas to highlight

Are there any immediate risks?

Are there any serious concerns?

10. Any other business:

11. Date and time of next meeting:

9.2 Appendix 2

SWAG SSG User Involvement Brief

9.3 Appendix 3

SWAG SSG Charity Involvement Brief

http://www.swscn.org.uk/networks/cancer/site-specific-groups/aswg-site-specific-groups-2/haematology-ssg/haematology-ssg-patient-public-information/

http://www.swscn.org.uk/wp/wp-content/uploads/2014/08/SWAG_SSG_Charity_Involvement_Brief.pdf

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